Patient Story - Megan Confounding Copay Accumulator Programs!
Forced to face immense challenges – mainly on her own, she’s grown incredibly resilient. Enjoying times of triumph, Megan persevered through low points due to the unpredictable nature of life and chronic illness. One of the most impactful turning points in Megan’s journey came in 2008 when she discovered the national patient advocacy organization for primary immunodeficiency disease, the Immune Deficiency Foundation. Since then, she’s gotten deeply involved and has been able to attend and advocate at many of their biannual national conferences and local events. Empowered by her newfound coalition and community, she has transformed from patient into advocate.
However, the chronic disease journey is never seamless for any patient. Megan’s advocacy skills were tested first-hand when she recently faced shocking bills upwards of $6,000. Previously Megan paid close to nothing out of pocket thanks to copay assistance programs. Copay assistance programs are funded by a third party and are paid directly to insurance companies to alleviate the high cost of specialty medications for patients.
I’ve spent two days working to uncover why I was receiving unexpected medical bills I learned I have a “specialty copay offset benefit” on my pharmacy plan that ensures I get NO ‘benefit’ from copay assistance programs!
In these hours on the phone she worked to understand why none of the immunoglobulin product charges were being applied to her deductible or co-insurance. Financial summaries on the pharmacy website read like a foreign language and showed that charges for the product were almost zero-ed out like that did not even exist, but she could see payments made by the copay assistance programs. Pharmacy Benefit Managers work to negotiate these savings that they pocket directly – to the harm of the patient. So while the insurance company is paid by the third party, the patient is charged as well. This is an insurance practice known as “copay accumulator programs” and patients find themselves slapped with a surprise bill when they uncover none of these payments have been applied to their deductibles or out of pocket costs.
"Until now the disease has not been a financial burden to my family. This experience has also taken an emotional toll on me in an unexpected way.
Megan is an avid leader and advocate with the Immune Deficiency Foundation and valued member of the Infusion Access Foundation Stakeholder Council. Share your story and connect with Infusion Access Foundation today. Together, we shape the future of healthcare access for all patients." Megan, Ryan
Infusion Access Foundation is a lead in several coalitions fighting to end PBM practices and Copay Accumulator Policies that directly harm patients. For more information on these topics and to take action, head to our CoPayand PBM Advocacy pages or watch our educational videos infusionaccessfoundation.org.
Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job "being sick" entails, can feel like too much at times, and it is a weight you shouldn't have to carry alone.
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Are you an infusion patient that wants to help shed light on the chronic disease journey? Reach out to the Infusion Access Foundation team so we can hear your story and help you find the right pathway for you to be really heard.
Infusion Access Foundation (IAF) is a community of patients united to protect access to treatments that you get at a clinic, such as infusions and injections. We support each other across all diseases and advocate with one voice that reaches policy makers.
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